“We are all mobile temples of God,” I read this morning from Father Richard Rohr, and then I took the mobile temples that are my two daughters and the mobile temple that is myself, and mobilized all three of us over a blizzardy mountain, on a two-hour car ride to a children’s hospital, where we had to visit the orthopedist. We had to get an update on Fiona’s scoliosis.
It was a complex drive, requiring me to disseminate multiple cheese sticks from the driver’s seat to the backseat whilst keeping one hand on the wheel. I also had to refill a sippy-cup, which I did between my legs. Somehow, my pants stayed dry. Somehow, no child cried. The answer to the latter “somehow” is a little-known motion picture called Frozen.
This is not a photo from our trip, but it might as well be. This is a photo of our drive just two days earlier, when we had to take another long trip to visit a different specialist so we could care for a separate aspect of Fiona’s condition: hyper-pronating feet. It’s like that old joke: You know you’re a special needs parent when… you know the difference between an orthotist and an orthopedist.
We do, and this week we had to visit both. (By the way, if you ever want to mix up the cocktail called “Parenting Burn-out,” shake up the ingredients of two far-away specialists’ appointments and combine them into a three-day period.)
In our first appointment this week, on Tuesday, we had Fiona fitted for new orthotics. Other than the snowy rural view, there’s nothing fun about driving a long distance to watch your kid’s lower leg get caged in polyethylene. Once at the office, Fiona struggle to stand in the boot-shaped, plastic orthotics that come up to her mid-calf. They were custom-molded for her and still, as soon as she stood in them, she looked for my lap and fell into me. I urged her up and encouraged her to take steps. She walked as though the lower halves of her legs had become stilts. I cringed.
But the alternative also makes me cringe: let my kid’s feet collapse more and more so that her foot-bones rearrange themselves. Without orthotics, my kid rotates her feet so far inward that she walks on her arches rather than on the balls and heels of her feet. So orthotics it is.
Two thousand dollars later (thank you, Medicaid, for picking up the tab), we left with the new orthotics. Although I tried to shoehorn myself into a state of gratitude (hooray that we have access to an orthotist! hooray for insurance!) I still drove home fatigued. So much effort, just to keep a foot in line. So much energy, just to keep a skeletal system from hurting itself. Most of us do that without polyethylene molds.
I was feeling discouraged. I hadn’t yet read the Richard Rohr quote. I hadn’t remembered that our bodies are mobile temples. Instead, I had stumbled again into thinking of the body as a potential specimen, as an athletic instrument, as an organism that has to prove its worth by strength and speed.
I was thinking about the next day, when Fiona would attend her second tumbling class with typical peers. If the second class went anything like the first, she would stumble at the mat and fall. She’d require total support to do something close to a somersault; she’d walk down the long length of the trampoline, on those collapsed feet of hers the size of hummingbirds, confused that she wasn’t taking flight like the other kids.
I was thinking, in other words, of all the ways her body doesn’t do what other bodies do.
It’s gold-medal thinking, trophy thinking. It’s the kind of thinking that hails a Heisman, and I don’t even like football.
But then Thursday’s quote: We are all mobile temples of God. And I remembered that the purpose of monitoring my kid’s scoliosis isn’t to measure it against the rubric of perfect, to watch it inch closer to or slip further away from some mathematical ideal. The purpose is to care for the little mobile temple that is my girl (…something Fiona’s 3-year-old sister knows well).
The point of a routine X-ray is to honor this house of hers, which holds within it not just organs and bones but something un-seeable.
The soul is a crystal inside a crystal, a thing of carbon, writes Steve Kuusisto in “The Souls of Disabled Folks,” and the electricity comes from a river as yet unnamed.
You can’t measure divine light on a rubric.
Today her school went ice-skating. I took the mobile temple that is my kid onto the ice, where she tripped over the skates and required the support of adults and a walker just to stay upright, but where she felt the smooth glide of blade against ice, where she didn’t want to leave.